nwasianweekly.com
Jan. 26, 2008

Photo provided by Minnie Lee

Minnie Lee actually manages to look cheerful as she crosses the finish line of the Wildflower Triathlon, held in Monterey County, Calif., in this photograph from 2006.

Culture and chronic illness

By Jennifer Kim
East West Magazine

Minnie Lee, 35, has her theory on why she was afflicted with fibromyalgia in her 20s. She was a “total Type A, uber-model Asian student”: a finance degree from Rutgers, three years as an investment banker in Korea and Hong Kong, a Master of Business Administration from UCLA and now a career with Fox Television. Plus, her relationship with her mother, who wanted Lee to move back to Korea, get married and start a family. Eventually, Lee said, the pressures started manifesting physically.

In 1997, Lee suffered a total system breakdown — she couldn’t digest food for months — accompanied by an outbreak of psoriasis. Next came severe flulike symptoms and muscle aching that wouldn’t let up. She carried Theraflu with her wherever she went. After two frustrating years of medical examinations only to find nothing suspect in blood tests, X-rays and EKGs, she finally was diagnosed with FM. Like most people, she had never heard of it.

Dr. Patrick B. Wood, senior medical advisor for the National Fibromyalgia Association, said FM is “based on the presence of chronic, widespread pain of at least three months’ duration, on the left and right side of the body, above and below waistline, so it’s in all four quadrants.”

The average person would welcome a neck and shoulder massage, but for an FM patient, a sudden touch could recoil them into pain. “On a good day, the pain is there but it doesn’t hurt; it doesn’t kill me,” said Lee. “But on a bad day, there’s a fork in there [pointing to her neck] and someone is squeezing it and twisting it all day long. I feel dizzy and woozy like I can’t really see straight. It’s hard to deal with sound sometimes, too.”

The illness is relatively new to the medical scene, having been given diagnostic criteria by the American College of Rheumatology in 1990. Before then, FM was not widely accepted by the medical community because there weren’t (and still aren’t) any standard laboratory tests to confirm the condition. It was thought of as a phantom disease or all in the patient’s head. Overwhelming recent research, however, does prove physiological abnormalities and neurological changes in FM patients, though the exact origin of the disease is still unknown. In June 2007, the Food and Drug Administration approved the first medication for FM – Lyrica (generic name: pregabalin), an anti-convulsant used to treat neurological illnesses.

Besides the widespread muscle pain, other symptoms include extreme fatigue, sleeping problems, headaches and migraines, jaw pain, irritable bowel syndrome, noise and temperature sensitivity, cognitive dysfunction (also known as “fibro fog”), restless leg syndrome and anxiety and depression. Common Western treatments include painkillers, muscle relaxants, antidepressants and now Lyrica.

After her diagnosis, Lee was at first relieved but then grew pessimistic. She remained bedridden for days, missed work with great frequency and, when she could get out of bed, often went out drinking with friends to feel better. She tried prescription medicines but none worked for her.

The turning point came when she realized how unhappy and unhealthy she had become. She knew she would have to mentally reprogram herself to get better. After much self-reflection, she remembered the high she felt after completing her first triathlon. This unorthodox route would become her passion, her way toward overcoming FM.

“Every time I race I laugh because I’m really slow. I can’t really go crazy because I don’t want to get sick the next day. I’m going total turtle pace. All my friends can’t believe it, but they have no idea how slow I am going,” she said. “I am the classic example of if I can do it, anybody can do it, and you can do it better!” She has completed six triathlons in the past two years, usually finishing one-and-a-half hours behind her peers. Her blog, www.tribeyondlimits.com, shares her experiences with FM and triathlons.

FM affects 6 million people in the United States and occurs more in women than men. It strikes all races and ethnicities, though Lee thinks Asians are probably underdiagnosed because of their unwillingness to admit weakness. Growing up, Lee remembers her mother often complaining of physical pain but doing nothing about it. Research now points to a possible genetic component to FM.

Treatments vary for each person, and many patients have coexisting conditions such as lupus, rheumatoid arthritis, HIV and sickle cell anemia. Lee now receives acupuncture once a week and takes supplements.

Dr. Malcolm Taw an assistant clinical professor at the UCLA Center for East-West Medicine, a clinic that blends the best of Western and traditional Chinese medicine, said that acupuncture is one of their main treatments for FM, althoughthere are many different schools of thought about both the treatments for and the origins of FM.

“Some people argue that the body is more sensitive in the tissue and some people believe it is in the spinal cord where all the changes take place,” said Wood. “I am in the school of thought that says the changes take place on the brain level.” Since FM does not cause inflammation of tissues, pain comes from how the brain chemically perceives it, he theorized.

And what about Lee’s theory that her Asian background and Type A personality are to blame for her battle with FM? Taw said there is no current research indicating a specific connection to the Asian culture, but he did say that culture and family could play a role if such associations lead to stress, a FM risk factor. Taw also noted that he sees a lot of Type A personalities with the illness.

Whatever the origin, Lee is determined to live well with FM. She credits the illness with giving her a purpose in life. As part of her recovery, Lee has become a volunteer with the National Fibromyalgia Association and was invited to attend their Third Annual Leaders Against Pain Seminar in Washington, D.C., in August 2007. She received leadership and media training, and she was the group’s first and only Asian American attendee. Lee hopes to use her new skill set, coupled with her triathlon events, to continue to raise awareness about FM, especially in Asian American communities.

“Something that could have harmed me has been beneficial for me,” Lee contemplated. “It’s my drive to be a better person; it’s my drive to be healthier and to reach out to other people.”

This article first appeared in East West Magazine and has been condensed.

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